Nancy St. Alban speaks out about a charity very close to her heart
Many people have not heard of myositis, but it’s a disease that hit very close to home for GUIDING LIGHT’s Nancy St. Alban (Michelle): Three years ago, her mother was diagnosed with the inflammatory muscle disease. "It’s said to have affected about 50,000 Americans," sighs St. Alban. "But the leading doctor [for] the disease says that you can definitely add a zero to the end of that number because that’s how many people have been misdiagnosed or don’t even realize that they have myositis, because it has so many different forms. A lot of times, myositis is misdiagnosed as rheumatoid arthritis."
To help raise awareness of the disease, St. Alban has recently become involved in The Myositis Association, and is even spearheading a benefit in New Orleans at the end of August. "There hasn’t been enough research done on the disease, so I’m trying to raise awareness so people will donate money toward research," she says, adding that there has been no change in the treatment of myositis in the past fifty years. "Hopefully, they can find a cure. There are cures; there just haven’t been enough studies done to find one."
A Hard Road To Travel
The changes that take place in a person once myositis sets in are quite devastating, St. Alban notes. "It takes different forms, but most of the time it’s a muscle inflammatory disease. It’s believed to be an autoimmune disease, so the immune system attacks its own muscles by the inflammation. That causes the muscles to atrophy, so you basically lose use of your muscles. Most patients end up bedridden or in a wheelchair. Within a 10-year span, that tends to be the way it goes."
Myositis is not a disease that strikes only adults, either. "It affects children, which is incredibly sad," St. Alban adds. "It’s a really terribly, terribly tragic disease. It’s similar to multiple sclerosis. MS causes lesions in the brain, but your brain stays [unaffected] so you’re mentally there. It’s the same with myositis; there aren’t lesions, but your muscles weaken. You are mentally okay, but your body just can’t do it anymore. It’s really a horrible, horrible thing."
A Daughter’s Pain
For St. Alban and her family, her mother’s battle with the disease has understandably been a tough road. "She’s struggling along," the actress confesses. "She’s very hopeful that something will be found out [about a cure], but it’s not easy when your body gives up on you."
To watch her mother — whom the actress says has always been the strongest person she knows both mentally and physically — struggle with myositis is sometimes disheartening. "She had eight children," marvels St. Alban. "She could do just about anything, and she was always on top of the world. Everyone idolized her, her spirit and her energy. It’s so hard to see her still having all those desires and thoughts and not being able to act on them because she physically can’t."
St. Alban is hopeful that next month’s celebrity charity weekend in New Orleans will not only open people’s eyes about the effects of myositis but have them open their wallets, as well. "I think it will be a lot of fun," she says with a smile. "And there are a lot of GUIDING LIGHT fans in New Orleans, so there should be a warm welcome." — Michelle Ann Moro
The Celebrities 4 Charity weekend in New Orleans will have three main events: a cabaret show, a luncheon with the stars, and a 2-hour tour of the city’s French Quarter and Historic District with the celebrities. A portion of each ticket will be donated to The Myositis Association. For ticket information, visit www.proeventsinc.com, or call (813) 814-0301. Special hotel rates are available at the Hotel Monteleone. Celebrities scheduled to appear with St. Alban at the event are GL co-stars Paul Anthony Stewart (Danny), Ricky Paull Goldin (Gus), Beth Ehlers (Harley), Bradley Cole (Jeffrey) and Stephen Martines (Tony), and THE YOUNG & THE RESTLESS stars Christian Jules LeBlanc (Michael), Greg Rikaart (Kevin) and Thad Luckinbill (JT).
Nancy St. Alban
